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CFS/ME and intracellular hypothyroidism

frozenborderline

Senior Member
Messages
4,405
http://spina.sourceforge.net/

i really ought to go to bed and spend a few days at least NOT LOOKING AT ANY RESEARCH because i really use up my energy reserves doing it but it is promising that people are looking into this stuff! perhaps I'll find some PEM reducing supplements and get enough energy to plow through some of this stuff. I do have a whole box sitting around of powders and pills that I haven't taken yet--everything from BCAA to pregnenolone
 

frozenborderline

Senior Member
Messages
4,405
oh, what do i make of my result. Well, the TTSI is out of range, although not by that much, but it technically indicates https://en.wikipedia.org/wiki/Thyroid_hormone_resistance I guess. there are a few ways of treating that from browsing the research but the main one seems to be triac https://www.ncbi.nlm.nih.gov/pubmed/2753985

just posted all this stuff here in case anyone else could get interesting results (only takes a sec to plug in yr results once u download)

triac is probably easier to obtain than suramin and less toxic, so while it may be a moonshot, it seems worth it for people that have hypothyroid symptoms and normal thyroid levels... i'm going to try t3 first, then t3 and lithium orotate, and then if those don't work, triac
oh and this was in the summer. when i get more labs i will run, maybe my results will have normalized or gotten worse, who knows...
 

Learner1

Senior Member
Messages
6,305
Location
Pacific Northwest
a sort of physiology/pharmacology nerd told me of it, and even ran my values when i kept forgetting to do it. what do i make of it? there is evidence that it works, just from a cursory look. Part of me (the part that's interested in ray peat) says that thyroid blood tests are inadequate anyway. but another part of me thinks that at least it prompts a closer look at bloodwork. My doctors never looked at the ratio, just that everything is technically in the normal range, which seems like bullshit. having endocrine modelling systems like this seems like a great thing.
Do you have a link for SPINA?

My doctors always test rT3, FT3, FT4, TPO and thuroglobulin antibodies. And once in awhile, aldosterone, tyrosine, selenium, iodine, and TRH.

Wondering where those fit in the SPINA model? Or, if TSH is suppressed due to T3 or NDT dosing, would results make any sense? Is there more comprehensive tool?

I'm still looking more broadly to understand how bone loss/gain can be driven by various pathways, including TSH and cortisol.
 

frozenborderline

Senior Member
Messages
4,405
Do you have a link for SPINA?

My doctors always test rT3, FT3, FT4, TPO and thuroglobulin antibodies. And once in awhile, aldosterone, tyrosine, selenium, iodine, and TRH.

Wondering where those fit in the SPINA model? Or, if TSH is suppressed due to T3 or NDT dosing, would results make any sense? Is there more comprehensive tool?

I'm still looking more broadly to understand how bone loss/gain can be driven by various pathways, including TSH and cortisol.
it only does thyroid function so far. seems like they are developing it to be able to be used with various endocrine pathways in the future
 

Learner1

Senior Member
Messages
6,305
Location
Pacific Northwest
The 3 numbers don't seem adequate given just the thyroid testing available. If one can't plug in the other things my doctors test relating to thyroid, it seems one might get stuck in the trap conventional endocrinologists seem to be stuck in, which is why there are so many unhappy thyroid patients on the web, as well as some of the more esoteric thyroid problems discussed lately around here.
 

Wonko

Senior Member
Messages
1,467
Location
The other side.
TTSI = 319, based on last panel, so maybe resistance, but my panel suggested that.
THYROID STIMULATING HORMONE 3.01 mIU/L 0.27 - 4.20
FREE THYROXINE 19.1 pmol/L 12.00 - 22.00
TOTAL THYROXINE(T4) 110 nmol/L 59.00 - 154.00
FREE T3 5.47 pmol/L 3.10 - 6.80
REVERSE T3 21 ng/dL 10.00 - 24.00
REVERSE T3 RATIO 16.96 15.01 - 75.00
THYROGLOBULIN ANTIBODY <10.0 IU/mL 0.00 - 115.00
THYROID PEROXIDASE ANTIBODIES 10.7 IU/mL 0.00 - 34.00
 

pattismith

Senior Member
Messages
3,957
Thank you Debored13, this is very interesting!

Thank you Wonko for sharing, you have such high TTSI!:thumbdown:

My values are the opposite than yours, so my result with Spina is also very different!

Structural parameters:
GT: 3.78 pmol/s(normal 1.41- 8.67)
GD: 20.76 nmol/s(normal 20-40)
sGD: -1.85 (normal -2 +2)
TSHI: 1.7 (normal 1.3-4.1)
sTSHI: -1.45 (normal -2 +2)
TTSI: 70* (normal 100-150)

From this paper:


"Recently, it was demonstrated that the TSHI is also reduced in patients with NTIS and thyrotropic adaptation (69).
Another estimate for thyrotropic function, the thyrotroph thyroid hormone resistance index (TTSI, also referred to as thyrotroph thyroxine resistance index or TT4RI), results with

TTSI=100[TSH][FT4]/lu

from equilibrium concentrations of TSH and free T4 and the upper limit of the reference interval of FT4 (lu) (75). This screening parameter is elevated in cases of resistance to thyroid hormone due to mutations in the THRB gene (RTH Beta, Refetoff syndrome) (75). It may also be a valuable marker for monitoring central response to substitution therapy with triiodothyroacetate (TRIAC) in RTH beta (76). In a large cohort of twin pairs TTSI was strongly influenced by genetic factors (77). A variant of the TTSI (without correction for the upper limit of the reference range) was significantly increased in offspring from long-lived siblings compared to their partners (78). This observation suggests slight resistance to thyroid hormone to be beneficial with respect to longevity."

I am supposed to have very low resistance to thyroid hormons, but nothing is said about what it means :lol:
 

frozenborderline

Senior Member
Messages
4,405
The 3 numbers don't seem adequate given just the thyroid testing available. If one can't plug in the other things my doctors test relating to thyroid, it seems one might get stuck in the trap conventional endocrinologists seem to be stuck in, which is why there are so many unhappy thyroid patients on the web, as well as some of the more esoteric thyroid problems discussed lately around here.
I certainly don't think one can rule out thyroid issues with a test like this. But in my opinion it can help to uncover things that a doctor wouldn't. actually that isn't opinion, it's fact. No normal doctor I've had has taken a close look at ratios of thyroid hormones--just flagged things that are technically out of normal range, and we all know how that is. this test immediately is already better than a pcp in that regard. the published articles on this as a diagnostic seem to indicate that it's pretty good.

Ultimately I think if you have symptoms somewhat consistent with hypothyroidism, you should explore thyroid whether or not you show up abnormal on a blood test. I'm certainly going to do that, albeit with a little trepidation.

But in my mind, this diagnostic is just another step up from the standard ones. It doesn't mean that blood tests are necessarily valid, but it's a more thorough diagnostic than standard ones
 

frozenborderline

Senior Member
Messages
4,405
Do you have a link for SPINA?

My doctors always test rT3, FT3, FT4, TPO and thuroglobulin antibodies. And once in awhile, aldosterone, tyrosine, selenium, iodine, and TRH.

Wondering where those fit in the SPINA model? Or, if TSH is suppressed due to T3 or NDT dosing, would results make any sense? Is there more comprehensive tool?

I'm still looking more broadly to understand how bone loss/gain can be driven by various pathways, including TSH and cortisol.
i think there was a disclaimer about this somewhere on the website/manual. it may not be. I forget if it was specific to a specific kind of thyroid therapy though, so if you're interested you should check for yourself.
 

Wonko

Senior Member
Messages
1,467
Location
The other side.
But what does a high TTSI actually mean clinically? Yes it's suggested, by, as far as I can tell, only one group of people, that it suggests resistance to thyroid hormones, probably genetically based, but that's all google will tell me.

If I inform my NHS GP that a calculation based on my "normal" thyroid panel says I have a high TTSI and this means I am thyroid hormone resistant she will probably just give me the "look" and say my numbers are in range, that I don't have any thyroid issues, so why am I wasting money on private testing.

So.......how to get around this, and is it clinically significant enough to be worth the effort?
 

pattismith

Senior Member
Messages
3,957
But what does a high TTSI actually mean clinically? Yes it's suggested, by, as far as I can tell, only one group of people, that it suggests resistance to thyroid hormones, probably genetically based, but that's all google will tell me.

If I inform my NHS GP that a calculation based on my "normal" thyroid panel says I have a high TTSI and this means I am thyroid hormone resistant she will probably just give me the "look" and say my numbers are in range, that I don't have any thyroid issues, so why am I wasting money on private testing.

So.......how to get around this, and is it clinically significant enough to be worth the effort?

are you taking any thyroid hormones supplements?
 

Wonko

Senior Member
Messages
1,467
Location
The other side.
are you taking any thyroid hormones supplements?
No, over a year ago I used NDT for a while, with miraculous* effect, but this tapered off and stopped working after several months.

*didn't "cure" my ME but did get rid of a load of other issues that had built up over the years and made life much less unpleasant.

edit - I stopped taking NDT over a year ago, probably around October 2016, after having used it for 8-9 months (I think)
 
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pattismith

Senior Member
Messages
3,957
No, over a year ago I used NDT for a while, with miraculous* effect, but this tapered off and stopped working after several months.

*didn't "cure" my ME but did get rid of a load of other issues that had built up over the years and made life much less unpleasant.

edit - I stopped taking NDT over a year ago, probably around October 2016, after having used it for 8-9 months (I think)
i wonder if your TH intake had some impact after you stopped it. How long before your thyroid panel did you stop it?
Also do you have a thyroid panel done before your experiment with TH?
 

Learner1

Senior Member
Messages
6,305
Location
Pacific Northwest
i think there was a disclaimer about this somewhere on the website/manual. it may not be. I forget if it was specific to a specific kind of thyroid therapy though, so if you're interested you should check for yourself.

Ok, I just spent 2 hours poking around. SPINA is a research tool. From whatvive could tell, it only looks at T3, T4, and TSH..I couldn't find anything with it being used in patients with infections, poor immune function, selenium or iodine deficiency, or patients on T3/T4 or NDT.

It seems that it could be a tool a doctor could use with healthy patients who are only on T4 or are untreated.
 

Wonko

Senior Member
Messages
1,467
Location
The other side.
i wonder if your TH intake had some impact after you stopped it. How long before your thyroid panel did you stop it?
Also do you have a thyroid panel done before your experiment with TH?
Over a year (thyroid panel was mid January this year) and no, I started the NDT temporarily to see if it had an effect before getting a panel done, due to cost and inconvenience of getting one, and when I tried to stop a few weeks later the "withdrawal" effects were crippling/hell, so I stayed on NDT until it tapered off, at which point stopping caused me no additional issues, as all of my old issues were back (but as they had phased in slowly over months rather than a couple of days they were "tolerable").
 

Learner1

Senior Member
Messages
6,305
Location
Pacific Northwest
But what does a high TTSI actually mean clinically? Yes it's suggested, by, as far as I can tell, only one group of people, that it suggests resistance to thyroid hormones, probably genetically based, but that's all google will tell me.

If I inform my NHS GP that a calculation based on my "normal" thyroid panel says I have a high TTSI and this means I am thyroid hormone resistant she will probably just give me the "look" and say my numbers are in range, that I don't have any thyroid issues, so why am I wasting money on private testing.

So.......how to get around this, and is it clinically significant enough to be worth the effort?
Here are some articles I've collected about thyroid in patients with ME/CFS. Perhaps they might help in discussing with your GP:

https://www.ballardplazapharmacy.com/chronic-fatigue.html

https://academic.oup.com/jcem/article/84/1/151/2866194/Dangerous-Dogmas-in-Medicine-The-Nonthyroidal

http://emedicine.medscape.com/article/118651-overview#a5
 

pattismith

Senior Member
Messages
3,957
But what does a high TTSI actually mean clinically? Yes it's suggested, by, as far as I can tell, only one group of people, that it suggests resistance to thyroid hormones, probably genetically based, but that's all google will tell me.

If I inform my NHS GP that a calculation based on my "normal" thyroid panel says I have a high TTSI and this means I am thyroid hormone resistant she will probably just give me the "look" and say my numbers are in range, that I don't have any thyroid issues, so why am I wasting money on private testing.

So.......how to get around this, and is it clinically significant enough to be worth the effort?

I agree your GP will not be helpful on this, nor even an endocrinologist, because the Thyroid resistance cases they are dealing with have out of range TH levels....

But you may be inspired by the way doctors are managing thyroid resistance, and maybe you will understand why your TH treatment helped you for a while and then stopped helping.
We can learn as much from treatment failure than from successes.

You will find some articles about how doctorss managed these patients.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4790576/

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2928892/

What is interesting, is that once doctors have the TH resistance diagnosis done, they treat according to the clinic and NOT according to the lab values.